A National Call to Action on Toxic Environmental Chemicals

Last year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. Last week, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks.

Our statement is a national call to action that seeks to significantly reduce exposures to chemicals and pollutants that are contributing to autism spectrum disorder, attention deficits, hyperactivity, intellectual disability, and other conditions.  Prime examples of these are chemicals in everyday use to make plastic more flexible, upholstery less flammable, and crops more plentiful.

The prevalence of neurodevelopmental disabilities has been increasing significantly according to the CDC, while the programs and services that are needed to support them remain under attack.  It’s time to change how we do business in prevention.  We need to shift the burden of proof to show that chemicals are safe before we allow them to affect a baby’s developing brain.

Read the New York Times and CNN coverage of the consensus statement.  For more information about Project TENDR, see http://projecttendr.com/

While we must work together to prevent developmental disabilities resulting from toxic exposures, we must work simultaneously to protect the services and supports for those who live with these disabilities now.  Want to get involved in advocating for services and supports for people with disabilities? Sign up for The Arc’s Disability Advocacy Network.

Moving to a New State Can Get Complicated   

By Wendy H. Sheinberg, CELA

Moving to another state is a challenge for most families. If a family member has disabilities, that challenge is even greater. State benefit programs vary, and states administer federal programs at the local level making it even more complex. When a member of your family has disabilities, it pays to do plenty of upfront research and to construct a “safety net” to protect against unanticipated gaps in service, problems and delays.

Health Care

Over the years, you have probably spent considerable time scouting for doctors, therapists, and other service providers to meet your loved one’s specific needs.  Be prepared to start over.

First, there’s the question of insurance. If you have a private policy, perhaps through an employer, moving to a new state may mean a new policy with different coverage or different premiums. If you have purchased coverage under the Affordable Care Act (ACA) through a state insurance exchange, you will need to learn what is available in the new location. ACA typically provides for a 60-day special enrollment period when a permanent move requires a change in health plan. To be safe, check on eligibility requirements early.

Medicaid is even more complicated, since you must reapply once you have moved. It can take anywhere from 15 to 90 days for approval to come through, although coverage will be retroactive. In the meantime, you will need to make other arrangements to handle critical needs.

Medicare is a federal program. Moving to a new state should not affect Medicare benefits. However, it is important to review and confirm that your Medicare supplemental policy and your prescription drug plan provide coverage in the new state.

Once you understand how you will be paying for health care, you will need to determine what resources are available. Local advocacy groups─ such as chapters of The Arc─ will likely be a source for advice and referrals. To minimize disruptions, establish as much of your new provider network as possible ahead of time.

Interview early intervention services and doctors before you relocate—ideally face-to-face, or by traditional or video teleconference, if necessary. Have medical records sent ahead to new physicians and schedule visits as soon as possible once you’ve moved. Ask your new insurance provider to pre-authorize prescriptions, and bring at least a 30-day supply of important medications with you.

Special Education

While the Individuals with Disabilities Education Act (IDEA) requires your new school district to provide services and supports comparable to those provided in the existing Individualized Education Program (IEP), you may have to renegotiate the IEP. Additionally, a 504 plan or other modified curriculum may also require renegotiation. The good news is that your existing records should provide a strong foundation for new discussions. In fact, if it’s time for the current plan to be updated, do so before the move so that your assessments and supporting materials are as current as possible. It can be hard to get school files during the summer, if you are moving during the summer, be sure to get the needed copies before classes end.

For military families, who generally relocate every few years, this is a recurring problem. Check out the Department of Defense’s special ed checklist.

Decision-Making Supports and Guardianship

Decision-making support can vary from state to state. If your adult child has executed a power of attorney, health care proxy or a supported decision-making agreement, consult with a special needs attorney in the new state to confirm their validity.

If your family member has a court-appointed guardian, you should consult a special needs attorney in both locations to understand your particular situation. Some states require that the guardian obtain court approval before the person under guardianship moves to another jurisdiction. You may also want to take this opportunity to explore a less restrictive means of providing support in the new state.

 

Many states do not recognize guardianships granted elsewhere. Unless both states have signed a reciprocity agreement, you could face different definitions of capacity, restrictions on a guardian’s role and more. Even if your new state will recognize a guardianship originated in your home state, most uniform guardianship statutes require some form of filing with the court in the new state.

SSI/SSDI

If you inform the Social Security Administration of your new address early, there should be no disruption to your SSI (Supplemental Security Income) or Social Security disability benefits. However, the amount of your monthly SSI payment could change, since it has both federal and state components. There will be no difference in Social Security disability benefits, based on work history of the individual or their parent.

SNAP (Food Stamps)

Check regulations in your new home state ahead of time, since there are differences in how this federal program is implemented locally. In some areas, there are significant asset limits for people with disabilities.

Social Service Agencies

Day care, in-home services, social programs, career assistance and other supports vary greatly from state to state.  Do your research well in advance to understand what awaits you.

Medicaid Waivers

While Medicaid eligibility is based on federal law, the eligibility standards, services, and support available through Medicaid waivers vary dramatically between states. These services include case management, residential services, employment services, and other non-residential services. An important consideration is that many states have years-long waiting lists for services, and new residents must reapply and go to the end of the line.

Housing

  • Home Ownership– Accessibility features may be high on your list, and it could be necessary to make alterations to your new residence. Architects or housing planners may be willing to view properties on your behalf and to advise on costs, which can differ sharply from state to state.
  • Section 8 vouchers – This is a national rent subsidy program, so if you already have a voucher, it will be recognized anywhere in the U.S. However, you will be responsible for letting your current Public Housing Authority know that you wish to move, working with the Public Housing Authority in your new area to locate your own housing, and terminating your current lease in accordance with its terms. “Portability” in Section 8 housing is very complicated and there are many pitfalls. See: https://portal.hud.gov/hudportal/documents/huddoc?id=DOC_35623.pdf

Special Needs Trusts (SNTs)

Have any special needs trusts (SNTs) checked by a special needs attorney in your new home state as soon as possible, since it may be necessary to have technical corrections/amendments made.

ABLE Savings Accounts

At this writing, 46 out of 51 states have enacted ABLE Act legislation, and many states are beginning to launch their ABLE programs. The original ABLE account legislation required the creation of the ABLE account in the individual’s state of residence. The December 15, 2015, amendment of the Able Act, as part of the Tax Extenders Package, removed the residency requirement. If the individual moves to a new state, the move will not affect the validity of the existing ABLE account. When moving, it is important to remember that each individual may only have one ABLE account. While you do not have to open a new account in the new state, if you decide to have a local account, be sure to follow all procedures to transfer the account so that there is only one account in existence.

Disability Parking Permits

To avoid delays in obtaining a disability-parking permit, try to register cars and vans ahead of time by having a family member relocate early. You’d be surprised how long this can take in some states.

The regulations and paperwork involved in crossing state lines can be dizzying. Delays and omissions can have serious repercussions for your loved one’s quality of life. Unfortunately, there’s no way to make this process easy, but if you begin planning early, you can lower your family’s stress level.

Think about keeping a binder with important documents that you update each year.  Another option is scanning and filing documents online in a “cloud” account, which will save you from combing through boxes upon arrival in your new home.

The Special Needs Alliance (SNA) is a national non-profit comprised of attorneys who assist individuals with special needs, their families, and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

 

 

 

 

 

 

This June, Help the Men in Your Life Be Healthier

Father And Son PortraitIn June, we celebrate Men’s Health Month and encourage men of all ages with disabilities to learn more about preventable health problems and to practice good health habits.

Why raise awareness about men’s health?

According to the Movember Foundation, around the world, men die an average of 6 years earlier than women. One of the key reasons for this difference is because men often don’t practice good health habits.

Men are less likely to visit a doctor when they are ill. And, when they do visit a doctor, they are less likely to talk with their doctor about the symptoms they experience. As a result, men reduce their chances of receiving the best care for their illnesses.

Men with disabilities often experience additional obstacles and challenges to good health. Barriers to health care and good health may include:

  • Difficulty getting to/from a doctor or inaccessible medical equipment
  • Challenges clearly communicating with a doctor about symptoms, treatment options, and medications so that the patient understands why testing out different treatment options or medications may be necessary
  • Challenges finding doctors who have expertise and are comfortable working with and treating people with disabilities
  • Lack of insurance to visit the doctor or inability to pay for services
  • Lack of education about good health habits
  • Perception from some doctors that problems are because of disability, not general health issues

Perception from some people that people with disabilities cannot practice good health habits

How can I help the men with and without disabilities I know to be healthier?

 

 

  • Educate the men in your life about the importance of eating The CDC has some great tips on maintaining ahealthy weight through healthy eating, which includes creating a plan that can help the men in your life eat more nutritiously.

 

 

  • Contact your local chapter of The Arc for assistance if you need help finding a doctor who has expertise and experience treating men with disabilities or assistance getting to/from a doctor.

 

 

 

 

 

 

2015 – A Year in ABLE

This month, states are beginning to launch ABLE Act programs and some people with disabilities can now take advantage of this new opportunity to build assets while preserving eligibility for means-tested federal benefits.  Let’s take a look at what’s happened over the last 18 months.

As 2014 closed, Congress enacted the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act.  This legislation recognized the extra costs of living with a disability and is anticipated to positively impact the economic futures of people with disabilities and their families.  Lead sponsors in the Senate were Bob Casey (D-PA) and Richard Burr (R-NC); other key senatorial champions were Ron Wyden (D-OR) and Orrin Hatch (R-UT).  ABLE was introduced in the House of Representatives by Ander Crenshaw (R-FL) and leading co-sponsors were Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX) with critical support from Kevin McCarthy (R-CA).  By December 3, 2014, it had garnered 380 of the 435 U.S. representatives as co-sponsors and passed the House by a vote of 404-17.  The Senate version of ABLE secured 78 co-sponsors, making ABLE one of the most bipartisan laws ever passed by the U.S. Congress.  On December 19, 2014, President Obama signed the ABLE Act into law.

This law will ease financial strains through the use of tax-advantaged savings accounts. Qualifying individuals would be those who: 1) experience disability onset before age 26, and 2) either are a Social Security disability program beneficiary or submit a disability certification (meet certain criteria for the Social Security Administration’s (SSA) definition of disability and possess a written diagnosis from a licensed physician).  Account funds may be used for a variety of disability-related purposes, such as basic living expenses; education; housing; transportation; employment training and support; assistive technology and related services; personal support services; health, prevention, & wellness expenses; legal, financial, & administrative services; oversight and monitoring; as well as funeral & burial expenses, all the while protecting eligibility for means-tested federal benefits, including SSI and Medicaid.

The law established new requirements which apply to ABLE account holders who are also SSI recipients.  Once an account exceeds $100,000, an individual is placed into a special SSI suspension period with no time restrictions. During this time, the beneficiary’s Medicaid eligibility will remain intact but cash benefits will be suspended.  When ABLE funds once again dip below $100,000, SSI is automatically reinstated.

The law also established requirements specific to Medicaid eligibility.  The $100,000 limit that applies to the SSI program does not apply to Medicaid.  However, upon the beneficiary’s death, remaining funds in the account may be required to pay back the state for Medicaid services provided during the individual’s lifetime.

Shortly after ABLE’s passage on the federal level, a legislative frenzy to create ABLE programs ensued at the state level.  Responding to this enthusiasm, in March 2015 the Internal Revenue Service (IRS), advised that states could move forward with these legislative plans even though federal regulations were not yet in place. The agency assured that once regulations were published, there would be a “transition relief” period, which would provide “sufficient time” for states to execute changes which would ensure federal compliance.

In June 2015, the Department of Treasury and the IRS published proposed regulations.  A public comment period followed, and in October, advocates voiced their concerns at a public hearing held in Washington, DC.  Treasury and IRS officials took advocates’ words to heart, and in November, the entity released interim guidance that lessened some administrative burdens and program costs while creating a more accessible program.  Among other things, participants would no longer be required to provide medical documentation upon opening an account.

Lastly, in December 2015, a major revision to the original ABLE legislation was signed in law, lifting the residency requirement, thus permitting states to offer national rather than state-resident only programs.

In the meantime, people with disabilities and their advocates sought further changes that would widen the scope of the law.  As a result, in March 2016, three new ABLE improvement bills were introduced. Each seeks to strengthen a different aspect of the original bill.  Below is a short summary of each:

  • The ABLE Age Adjustment Act would raise the age limit for eligibility for ABLE accounts to individuals disabled prior to age 46. The Senate bill (S. 2704) is sponsored by Senator Bob Casey while the House version (H.R. 4813) is sponsored by Representative Chris Van Hollen.
  • The ABLE Financial Planning Act would allow tax-free rollovers between an existing 529 college savings account and an ABLE account. Senator Bob Casey has introduced the Senate bill (S. 2703), while Representative Ander Crenshaw is sponsoring the House version (H.R. 4794).
  • The ABLE to Work Act would allow individuals to exceed the annual contribution limit and save more money in an ABLE account if the individual earns income. The Senate bill (S. 2702) is sponsored by Senator Richard Burr while the House version (H.R. 4795) is sponsored by Representative Ander Crenshaw.

Today over 90% of the states have enacted their own ABLE act and most are focusing on implementation.  Opening their ABLE programs earlier this month, Ohio and Tennessee are leading the way; Nebraska is expected June 30; and Florida is set to offer accounts July 1.  With the exception of Florida, all will be national programs.   It is anticipated that up to 40% of the remaining states that have enacted legislation will have programs active by year-end.  For more information on where a particular state is in the process, please see The Arc’s ABLE implementation chart.

Update: On June 30, 2016, Nebraska opened their ABLE program.

Update: On July 1, 2016, Florida opened their ABLE program

The Arc’s Center for Future Planning™ Launches Financial Literacy Training for Low-Income Families with Children with Disabilities

Washington, DC – The Arc’s Center for Future Planning™ is pleased to announce it has received a $200,000 two-year grant from the MetLife Foundation.  This funding will be dedicated toward developing a new financial literacy training program for families that include a child with intellectual and developmental disabilities (I/DD), with a specific interest in reaching historically underserved racial and ethnic communities.

Research has shown that disability and poverty are intertwined, and many families that have a child with I/DD struggle financially.  Often, income declines when a child with I/DD is born because parents take time off of work or leave the workforce entirely to care for the child’s needs.  This reduction of household income, combined with the income and asset limits in many public means-tested benefits available to these families, only complicates asset building.

The training will address these challenges by educating and supporting low-income families to lay the foundation for a secure financial future for their child with I/DD.  More specifically, The Arc will develop a financial literacy curriculum that can be later distributed throughout The Arc’s national network of over 650 chapters.  Topics to be covered will include credit, debt, choosing financial products and services, investing, and asset protection, as well as disability-related topics, such as information on benefits for people with disabilities, as well as special needs trusts and ABLE Act accounts.

“During our 65 year history, The Arc has always recognized the importance of supporting families of people with I/DD.  In these challenging economic times, it is all the more important that we work with families of children with I/DD to stabilize the family’s financial situation.  This support from the MetLife Foundation will allow The Arc to assist families in achieving long-term financial stability,” said Peter Berns, CEO of The Arc.

The Arc will lead a team to create a nationally replicable, culturally competent curriculum to provide financial literacy education to low-income families.  After piloting the training with three chapters, The Arc will modify the curriculum so that it can be distributed through our network of chapters around the country. This work will also be supported by the Family Support Research and Training Center through a subcontract with the University of Illinois at Chicago and made possible by grant number 90RT5032-02-01 from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at the US Department of Health and Human Services Administration for Community Living (US DHHS/ACL).

The mission of The Arc’s Center for Future Planning is to support and encourage adults with I/DD and their families to plan for the future. The Center provides reliable information and assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Federal Agency Committed to Hiring, and Promoting, Employees with Disabilities

Keith Coburn 2Eighty-five percent of working-age individuals with disabilities are either unemployed or underemployed. Of the 15% that are employed, only half are working in inclusive jobs in the community. Fortunately, new government regulations are focused on changing these grim statistics. A recently proposed rule would require federal agencies to achieve a workforce participation rate of 12% for people with disabilities. One proactive agency, the Federal Communications Commission (FCC), is already leading by example, implementing an initiative dedicated to individuals with disabilities working in competitive and inclusive positions. The Arc’s employment division, The Arc@Work, has been supporting the FCC with their hiring efforts.

After working seasonal and part-time jobs for years, Keith Coburn was ready for the stability and security that comes with full-time employment. So, he reached out to his local chapter of The Arc, The Arc of Prince George’s County in Maryland, where he was connected through The Arc@Work to an opportunity at the FCC. A year and a half on the job, Keith performs a variety of tasks that range from sorting mail to updating and maintaining the database of licensing sales and transfers. As a problem-solver and a “master of Excel”, Keith’s responsibilities have grown steadily at the FCC and he is in the process of receiving his second promotion.

The quality of Keith’s work and his strong work ethic have made, and continue to make, a huge impression on all those who have had the opportunity to work with him. When asked to describe Keith, his supervisors, Annette Smith and Lisa Scanlan, expressed nothing but high praise. “Dependable”, “great team member”, and “great work product” were only some of the ways they described Keith’s performance.

“When Keith is assigned work, he always completes his task on time,” commented Annette. Lisa summed it up by adding: “He always steps up to the plate. He is the ideal employee.” Keith attributes his success to his determination. His advice? “Stick with it. Be flexible and be persistent,” said Keith.

The Arc@Work is a social enterprise that supports employers to successfully locate, hire, and support employees with intellectual and developmental disabilities. To learn more, visit our website at thearc.org/thearcatwork or contact Katherine Murphy at Murphy@thearc.org.

 

The Arc of Delaware Reaches Fair Housing Settlement

Washington, DCThe Arc of Delaware and its counsel Relman, Dane & Colfax, The Arc of the United States, and Community Legal Aid Society, Inc. are thrilled to announce the recent settlement of The Arc of Delaware’s disability discrimination complaint against Sugar Maple Farms Property Owners’ Association, Inc. (SMFPOA). That complaint, filed in March 2015 with the U.S. Department of Housing and Urban Development (HUD) and the Delaware Division of Human Relations (DHR), sought a declaration that SMFPOA violated the Fair Housing Act when it refused to approve The Arc of Delaware’s acquisition of property meant to house four individuals with intellectual and developmental disabilities (I/DD) in a single family home integrated within the community. The complaint sought damages to compensate for the loss of housing opportunities and for violations of the federal and Delaware Fair Housing Acts due to disability discrimination. After DHR issued a finding of discrimination in March 2016, SMFPOA agreed to settle the case and has entered into a Conciliation Agreement with DHR, HUD, and The Arc of Delaware as of May 26, 2016.

“This case shows the importance of vigorously enforcing the Fair Housing Act,” noted Michael Allen, a partner with Relman, Dane & Colfax.  “Although the Act has prohibited disability discrimination for nearly 30 years, we still need to fight every day to redeem the promise of community living for people with disabilities.”

In July 2014, Terry Olson, Executive Director, submitted a bid on behalf of The Arc of Delaware for a lot owned by SMFPOA. The Arc of Delaware intended to build a single family house in a Milford, Delaware residential subdivision with 65 other lots. His offer was accepted by the seller contingent on SMFPOA’s approval of the sale. However, once SMFPOA learned that residents with I/DD would be living there, it told Mr. Olson that such use was barred by its covenants and also expressed concerns about the amount of parking that would be required by the residents’ support staff.

Mr. Olson tried to explain that The Arc of Delaware’s use was protected by the Fair Housing Act and offered to accommodate the extra parking needs while maintaining a uniform appearance within the community. He also offered to give SMFPOA members a tour of a similar home in the area in order to allay any concerns about daily operations. Shortly thereafter, The Arc of Delaware received a letter from SMFPOA reiterating its position that the sale was not approved because it would violate SMFPOA’s covenants and suggesting that allowing people with I/DD into the community would reduce property values and disturb the “quiet enjoyment” of neighbors. The loss of the property and subsequent delay in state funding have deprived The Arc of Delaware and its clients of at least four community-based housing opportunities.

The Fair Housing Amendments Act of 1988 (FHAA) makes it unlawful to “make unavailable or deny” a dwelling because of disability as well as to refuse to make “reasonable accommodations in rules, policies, practices, or services, when such accommodations may be necessary to afford such person equal opportunity to use and enjoy a dwelling.” Federal courts have consistently held that community supported housing for unrelated individuals with I/DD does not constitute a “business” and does not violate “single family” restrictions, and Delaware law expressly recognizes such housing as “single family” properties for zoning purposes. Further, the courts recognize that most discriminatory remarks are made in coded language, such as the need to “maintain property value.”

Once the complaints had been filed, DHR performed an investigation and issued a finding of discrimination in March 2016. Subsequently, SMFPOA agreed to settle the case. Among other things, the Conciliation Agreement requires SMFPOA to:

  • Apply the same terms and conditions of rental to anyone occupying its properties without regard to disability or any other protected class;
  • Provide written compliance reports to DHR and/or HUD when requested;
  • Allow HUD and DHR to inspect the premises at any time within one year of the agreement;
  • Notify its members and residents in writing of rules, policies, and practices relating to its non-discrimination policy and to prominently display the Equal Housing Opportunity logo within any relevant advertisements it distributes;
  • Ensure that all of its current board members receive comprehensive training on the Fair Housing Act within 90 days of signing the agreement and that all future board members receive such training within 30 days of their election;
  • Pay The Arc of Delaware $55,000 in damages, including attorneys’ fees and costs.

Mr. Olson remarked: “It is challenging enough in Delaware for individuals with I/DD to find affordable housing in the community. When you add discrimination to the mix, it makes it nearly impossible. This victory will help ensure that individuals with disabilities in Delaware will have the same rights as other citizens to live in the community of their choice.”

Shira Wakschlag, Staff Attorney with The Arc of the United States, noted: “For more than 65 years, The Arc has sought to enforce and protect the human and civil rights of individuals with I/DD by working to ensure those with disabilities are able to live in the community free from discrimination and institutional settings. Without the vigorous enforcement of state and federal disability rights laws in instances of discrimination such as this one, this fundamental right would be eroded.”

Relman, Dane & Colfax, a civil rights law firm based in Washington, D.C., served as lead counsel on the case, with The Arc of the United States and Community Legal Aid Society, Inc. serving as co-counsel.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country, including The Arc of Delaware, promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Statement from Julie Petty, Loretta Claiborne, Ricardo Thornton and Frank Stephens

IMG_0788On June 6, 2016, a group of self-advocate leaders met with Gary Owen to discuss offensive content in his Showtime comedy special “I Agree With Myself”.

Statement from Julie Petty, Loretta Claiborne, Ricardo Thornton and Frank Stephens:
Today, Julie Petty (Bentonville, Arkansas), Loretta Claiborne (York, Pennsylvania), Ricardo Thornton (Washington, D.C.) and Frank Stephens (Fairfax, Virginia), representing a broad coalition of disability advocates, met with Gary Owen, a comedian and entertainer.  The meeting was arranged for both sides to listen and hear one another’s perspectives about a segment on Mr. Owen’s comedy special on Showtime.

Prior to the meeting, Mr. Owen decided to remove the segment in his Showtime special in which he depicts people with intellectual disabilities.  Effective immediately, the special will still be available On Demand but will not include this portion.

The meeting was educational, positive and productive.   The outcomes from the meeting were significant.  Mr. Owen made positive commitments regarding use of the “R word” in his comedy routine.

The coalition has agreed to end its advocacy efforts in this situation.  The coalition, through the voices of self advocates Julie Petty, Loretta Claiborne, Ricardo Thornton and Frank Stephens, express our appreciation to Mr. Owen for listening and acting positively to further understanding and healing.

Roll the Vote

I am an individual with a disability, diverse needs, and I am also civically engaged and politically active. I’ve discovered that it is nearly impossible for me to shy away from my civic duties and the issues that affect me the most. You can thank former First Lady Barbara Bush for this, as one of the most defining civic moments was when I was eight, and I gave her a tour of the residential care facility in which I lived at the time. When she asked me, “What do you want to be when you grow up?” My response was, “I want to be the first female President of the United States, but I don’t know. I have this wheelchair thing.” Mrs. Bush reminded me that one of our great presidents, FDR, also had a wheelchair thing. She also said that the MOST important thing I could do was register to vote when I turned 18.

This event inspired me to learn as much as I could about the political process and the various levels of governance. On my 18th birthday, I decided to follow the advice of Mrs. Bush and I registered to vote. It is the best decision I’ve made in my life. Ever.

Registering to vote was an uncomplicated process for me. Being informed on the issues and candidates: that was a little more challenging. I don’t speak political acronyms or legalese. Finding people who could explain things to me in an understandable manner, without treating me as intellectually inferior, was dang near impossible.

I heard a saying once that goes like this: “What’s the best way to eat an elephant? One bite at a time, of course.” I promised myself that I would approach political involvement and voting the same. Even today, I take one bite at a time, and one step at a time. I spend months reading and researching issues, ballot initiatives, and candidates so I am comfortable and confident in my decisions.

I continued to pay attention to major milestones in the disability community. In 1990 the ADA was signed into law, the same day I left the residential care facility where I had met Mrs. Bush.  I spent the rest of my formative years in a small town (400-ish people) in a very rural state. South Dakota has an approximate total population of 800,000. With numbers that small, I realized that every vote is very important; it all matters.

I continued to play an active part in civics and in 2002 I was very thankful for the passage of the Help America Vote Act. This act provided information, resources and technologies which have made the voting process much easier for me. However, improved access and information does not automatically eliminate ignorance. That’s what humor is for.

In the 2014 US Senate election for South Dakota, I was happy to vote for former governor M. Mike Rounds. I had spent months volunteering for his campaign. I was anxious-nervous, anxious-excited (like a kid at Christmas) as Election Day dawned. I went to vote.

This was the first time I was ever voting in a community that was not my hometown, and in a midsized city in South Dakota. The poll watcher, who was rather elderly, asked to see my driver’s license. No problem. She asked me to sign the register. Then, she stopped herself, “Honey, can you write your name?” “What?” “Do you know how to write?” Uh, yeah. The woman behind me in line, whom I’ve known for years, goes “Kati can not only write her name, she can spell it, too.” “What?” “I’ll have you know the woman you are speaking about is college educated, and intelligent.” “Oh. Sorry.” I signed in, went to vote and didn’t think any more about the issue.   The uninformed woman, was effusively apologetic. “I just didn’t know they let your kind vote.” “Really, what kind is that…humankind?” Well, no, uh…

Subsequently, I’ve seen the poll-watcher at various events in the community. I feel like I should write her a thank you note. I genuinely appreciate her. She is a constant reminder for me that while we, as the Disability Community, have come a long way, we still have much work to do to be seen and valued as equals. It is people like this woman who continuously emphasize just how important my vote is, and why it is vital that I show up to the poll.

In the 1990s, there was a movement called ROCK THE VOTE, to register and politically engage young people. With the upcoming presidential election, the time has come to ROLL THE VOTE, to register and politically engage people with diverse needs and disabilities.


Kati is a small town, South Dakota woman who rolls through life. She is simply trying her best to positively change the world. The former governor for whom she voted is now United States Senator Mike Rounds (R-SD), and it is Kati’s pleasure to work for him as an administrative assistant and researcher in one of his regional offices.  

Zika – We All Have Skin in This Game

Some public health crises capture our attention more than others.  A few years back, the phones were ringing off the hook on Capitol Hill about Ebola.  But not so for the Zika virus, we are hearing from Congressional offices.  Is this because we think that Zika will only affect women who are pregnant?  Or just those who live in southern states?  Are we not understanding that this virus could potentially quickly spread in local communities or that people in the south who are at greatest risk right now travel to other parts of the country?

Such a false sense of immunity could cost us dearly.  Studies are rolling in and, taken together, are painting an alarming picture.  According to a study released last week, two million pregnant women in the U.S. could contract the virus by November while another study finds that 29% of Zika-infected women gave birth to babies with adverse outcomes, including stillbirth, microcephaly, and other serious health problems.  Another found that microcephaly alone occurs in up to 13% of babies born to their mothers who became infected during their first trimester.  And this is only what we do know.  Still unknown are, among other things, the long-term effects of Zika on adults and children who contract the virus after birth.  “We still don’t know yet the full rainbow of complications that this virus may produce,” according to the director of communicable diseases for the Pan-American Health Organization.

If we don’t act now, the implications could be dramatic in both the short and long term.  For instance, the travel industry could be decimated in the southern coastal states this summer as infection rates and corresponding fear rise.   Further down the road, state Medicaid programs could see a surge in demand for services for not just people with microcephaly, but those with the still unknown other disabilities that may be significant and lifelong.

Congress left for its Memorial Day recess before having finalized an emergency spending bill for Zika prevention.  When it reconvenes this week, it is imperative that Members hear from their constituents who understand that that Zika prevention is truly a national and urgent priority. Stay up to date on this issue and many others impacting people with disabilities by signing up for our Disability Advocacy Network – be in-the-know and take action when needed!